Julie Houston
@julesahouston.bsky.social
Body malfunctioning since 1998 #MECFS #PoTS #MCAS #hypermobility & other delights. I'm a #LongCovid #LongCovidKids and #Pans #Pandas ally. Here to make connections old & new. #CovidIsNotOver #CleanAirForAll #MasksInHealthcare #GreatestMEdicalScandal
Thanks to @ukpots.bsky.social for having us at their medical conference yesterday. Clinicians from around the country took home copies of the novel/guidebook, and showed great interest in the children’s poster #artwork. We even had requests to send copies for paediatric waiting room and clinics. 😃
Great news #pwME #LongCovid #POTS @NormaLyte is now available in the UK and Canada. These have been the most effective electrolytes I’ve tried. I recently added the orange & watermelon flavours & tolerate them well. Use code FIRST30 for 30% off your first order. normalyte.com/pages/availa...
I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
I am heartbroken to report that my sweet son James Strazza left us on May 4, 2026. His third book, Lowcountry: For the Eyes of the World, will be published in time for Severe ME week in August. I will post excerpts from it until then.
In time for #MEAwarenessDay our book has been published. #MECFS kills and ruins lives. It's imperative that it is researched and treated. Understanding its complexities is key - let's spread that information. Please buy a copy, read and donate to your doctor. NB #MedSky amzn.eu/d/01FVLQJm
What Is Myalgic Encephalomyelitis Like?: Patient & Caregiver Perspectives
Buy What Is Myalgic Encephalomyelitis Like?: Patient & Caregiver Perspectives by Writers, WIMEL, Center, Bateman Horne (ISBN: 9798258485526) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.
amzn.eu
For most of us, #MyalgicEncephalomyelitis is a life sentence. No appeal. No parole. No automatic release. It’s cruel, relentless, and gradually strips away the life you once had, reducing it piece by piece until all that remains is you and four walls. A prison without bars. #MEAwarenessDay #MECFS
This photograph, titled ‘Suffocated’, was my submission to the A Quiet Storm’s online group exhibition ‘Myalgic Encephalomyelitis Kills’, which launched today on the International ME/CFS Awareness Day. 1/10 www.aquietstorm.me/myalgic-ence... #MECFS #Photography #OnlineExhibition
This #MEawarenessDay we are delighted to have an article published in in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!) www.csp.org.uk/frontline/ar...
Do no harm: supporting people with ME/CFS
csp.org.uk
💙💛 Today on ME Awareness Day, Dunfermline Advocacy is sharing to raise awareness, promote understanding, and support those living with ME. #MEAwarenessDay #CitizenAdvocacy #DunfermlineAdvocacy #MEAwareness #SupportAndUnderstanding
I've been very fortunate being able to access the RNA test from @jackamatica.bsky.social This is where my “Seeds of Hope” come from. Patient led science, not painting pictures of bloody flowers. We shouldn’t have to fund this ourselves & most patients simply can’t afford to. #MEAwarenessDay
Today is #MEAwarenessDay ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner
At Christmas, instead of exchanging gifts, adults in our family make a donation to charity. This year we chose @longcovidkids.bsky.social & our total was an incredible £1,350, thanks to the @BigGive doubling our donation. Still 4 days left to make an impact! www.longcovidkids.org/christmas-ch...
BIG GIVE CHRISTMAS CHALLENGE | Long Covid Kids
From 2–9 December 2025, every donation made to our campaign through BigGive.org will be matched £1 for £1 thanks to our Big Give champion The Reed Foundation. #ChristmasChallenge
longcovidkids.org
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.
Big news #pwME! Prepare yourselves! The initial DNA results from the @DecodeMEstudy will be available in the next few days. Emails will be sent out around 7pm on Wednesday 6th August & results will be published on their website at the same time. Fingers crossed for some momentous results! 🤞🙏
This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
![More, more, more
You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.
From Isla aged 8](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tbjkzimgulox2kwiykbhspfn/bafkreicns5bi5awyizdmale5oex7evjygihsoc7lzaop536t4fh4tunxna)
Swifts and Swallows@swiftsandswallows.bsky.social · last yr.This came up in my fb memories today. Isla wrote about her pushy GET driven OT and @tymestrust published it. How I regret being referred to that OT. tymestrust.org/tymespublicati… #MEAWARENESSMONTH #severeME #rememberingisla
I have deleted my previous post at the request of @swastrosarah.bsky.social as the family thankfully now have legal assistance. #PwME #MEKills
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
sarah boothby@swastrosarah.bsky.social · last yr.Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
Award-winning author and journalist, @georgemonbiot.bsky.social was today joined by 8 fellow Lift The Ban sign-holders and around 200 members of the public in support of the de-proscription of direct action group Palestine Action. Join us on August 9th: wedonotcomply.org
We believe clean air should be accessible to all, and we’re so excited to support Air Library Scotland’s initiative to rent out air purifiers for free across Edinburgh. If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself. Check it out! @airlibraryscotland.bsky.social
Air Library Scotland@airlibraryscotland.bsky.social · last yr.We're excited to announce we're now ready to take booking requests for air purifiers in and around Edinburgh! Anyone can borrow & loans are free. Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative! Request form: cryptpad.fr/form/#/2/for...
We're excited to announce we're now ready to take booking requests for air purifiers in and around Edinburgh! Anyone can borrow & loans are free. Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative! Request form: cryptpad.fr/form/#/2/for...
"The signatories, including the former supreme court justices Lord Sumption and Lord Wilson, court of appeal judges and more than 70 KCs, say that war crimes, crimes against humanity and serious violations of international humanitarian law are being committed in Palestine."
The Guardian@theguardian.com · last yr.UK must impose sanctions on Israel to meet legal obligations, say more than 800 lawyers
@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...
Katharine Cheston@kacheston.bsky.social · last yr.The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...
I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).
![Beliefs about ME/CFS can shape lives
Dear Editor,
Last year, I completed a Wellcome-funded PhD exploring women’s experiences of ‘medically unexplained symptoms’ (MUS), a category into which ME/CFS is typically subsumed. During my PhD, I had the privilege of interviewing women living with illnesses including ME/CFS.
My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned.
While Dr Miller and colleagues argue that ‘[r]eframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS’,[1] my recovery did not involve any of these factors. It simply happened. My health has changed drastically, but my beliefs about the illness and its causes have remained steadfast since 2008.
In 2013, after four years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues.[1] What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms. In short, the belief that there was a ‘path’ to recovery (as Dr Miller and colleagues put it),[1] if only I chose to search for it.
The National Institute for Health and Care Excellence (NICE) no longer recommends therapies based on deconditioning and exercise avoidance theories as perpetuating ME/CFS,[2] recognisin…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreieqlzwmnerovslptiot6af6fxam2xpf4dzxrs64ec5ifxcflesy3u)
The BMJ@bmj.com · last yr.Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK. Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, @paulgarnerwoof.bsky.social and colleagues www.bmj.com/content/389/...
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
The brilliant PD Avengers are calling for the Parkinson’s community to sign up to their 2025 World #Parkinson’s Day campaign! ⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day. 👉 Find out how you can get involved: https://buff.ly/4hwNvaF
Our next online support meeting for #LongCovid patients (& parents) is next MONDAY 10TH FEBRUARY AT 7PM. No need to register. Just click on the zoom link below Join Zoom Meeting us06web.zoom.us/j/86731632565?… #Ireland #LongCovidKids Meeting ID: 867 3163 2565 Passcode: 931955
Join our Cloud HD Video Meeting
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Petition update! "Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources"." @exceedhergrasp1.bsky.social & others have now made submissions. Please keep signing & sharing. www.change.org/p/prevent-fo...
Help Very Severe ME patient Line in Denmark pay for a lawyer to defend her freedom
Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources". Line added "They are using it against me, further...
change.org
Great to see @batemanhornecenter.bsky.social here! #PwME #pwLC
Bateman Horne Center@batemanhornecenter.bsky.social · 2y agoCheck out The Basics: Orthostatic Intolerance with Clayton Powers, DPT! Learn about OI, its symptoms, and tips for pacing upright activities. Watch now: bit.ly/3W9TzNG #OrthostaticIntolerance #BatemanHorneCenter #ChronicIllness #PatientEducation
open.substack.com/pub/immuneil... Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional.. Calling this doctrine “a fraud” used in “gaslighting”.. "cost effective"..
Britain on the Verge of Criminalizing “Malingering” by ME/CFS Patients and Other Desperately Ill People
Scottish lawyer David J. Black attacks the “ruthless war of attrition” on benefits for Britain’s “poor-sick” and its U.S.-based insurance company instigators
open.substack.com